YOU may not know this; three of our children have disabilities. Our son and smallest daughter are affected with autism, and our four-year boy has pervasive developmental disorder. Why am I telling you this? Because this is how we came to be in Goulburn.
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Parenting an autistic child is an extreme sport. Extreme parenting. You really need all the support and services you can get, and unfortunately living in Northern NSW we did not have access to services. Simply because they didn’t exist, it is very hard to entice professionals to work and/or stay in the country. So we made the tough decision to move to Goulburn, leaving our family and friends (our support network) behind, because our children needed the services available to us here, more than anything else.
I have to say it is a decision we (so far) do not regret, our children have improved in leaps and bounds since coming to Goulburn, not only educationally but their health needs are finally being met as well. Being so near to everything, but still having that country feeling of a small community, works so well for us.
Living with autism can be very isolating for families. Friendships are hard to keep up, because the reality is we can’t take these kids anywhere without a lot of planning. And coming to my house isn’t going to be that much fun either, unless you can appreciate that my children may use you for a jungle gym, handkerchief or horse, and they don’t play nice.
Recently I made a trip to an electronics store and while there a stereo was turned up in demonstration for a customer, my autistic son panicked and began screaming and took off running for the car park. I tell you the kid runs like a gazelle.
Sometimes an outing can be so daunting due to the possibility of a meltdown from your child, that it puts you off wanting to leave the house. I have to make a conscious decision not to do this and get out there, you just have to.
I’ll be that harangued looking mum with six children tethered to the shopping trolley, screaming our way around the supermarket. Normal parenting practices were thrown out the window for us years ago. Autism changes everything.
It changes your perception of a normal lifestyle, and sometimes you can sink so far into that lifestyle, that it’s not until you see how a family unaffected by disability lives their lives, that you get reminded what you are missing out on.
To help us maintain some sort of sanity we rely heavily on services, services mostly provided by the Government. However one service that has been of great help to us has been the Autism Assistance and Advisory Service.
This service receives no recurrent government funding, and relies on donations to offer their services free to families affected by Autism. Services like these need to continue and need more funding. With this in mind my husband and eldest daughter are entering next month’s City2Surf, to raise money for this service.
Last month they climbed Pigeon House Mountain on the south coast of NSW as part of their preparation for the event. If you would like to support their run for Autism you will find a link to sponsor them on my webpage www.candysfamily.com, or contact me at the email address above.
EMAIL: candysfamilyblog@gmail.com